Poll The FM and ME/CFS Gynecological History Poll

[PDXhausted]

Only three studies have been done in 30 years. It's kind of both scary and exciting. If it wasn't for a female CDC researcher - Dr. Boneva - who told me she pushed for these studies - they wouldn't have been done. Look at what they showed up though. One wonders what else hasn't been done that open up other insights? Probably lots of things.

Cort, I just want to say how much I appreciate you bringing awareness to this subject. When I had my first ruptured endometrioma in 2004 at age 24, there was hardly anything in the way of resources. They basically said we can do surgery but we might not find anything, or you can go on continuous birth control to prevent it.

So for 8 years I was on continuous birth control while gradually getting sicker and sicker to the point I was nearly bedridden. I started looking for information and there was nothing. No one had ever done a study on the long term effects of continuous birth control. They still don't know what causes endometriosis and the treatments are basically the same. It just astounds me over and over how little research is done on female gynecological problems with the exception of breast cancer and infertility.

Now that I know things like endometriosis is associated with defects in NK cells, and continuous birth control suppresses the cell-mediated immune system, and who knows what else- I really wonder what has happened in my body and what the implications are for women in general.

Anyway, its great to see men who are willing to advocate for this subject. I can imagine it must be hard to be a male who is affected by a disease that has a larger percentage of female sufferers and is associated with gynecological problems. But the more we look into all aspects of this disease, the better chance we'll have of figuring it out. So anyway, a big thank you

 

[Merida]

My CFS/ FM began abruptly with a neck/pelvis injury. I had been in a nonsymptomatic menopause for over a year, but 1 week after injury I began a very heavy 2 week period. I then developed cystic ovaries and fibrocystic breasts. Until the injury (age 49) my gynecological history was totally normal.

 

[Tory]

Have always had very painful periods and been to the doctors numerous times but never been checked out so don't know what I might have. I often get sickness and diahorea with them that I now manage to stop if I take Buccastem early enough. I often get a period type pain mid month and now I am getting a feeling like I am been pinched inside my stomach, does anyone know what this might be?

 

[Telula]

Have always had very painful periods and been to the doctors numerous times but never been checked out so don't know what I might have. I often get sickness and diahorea with them that I now manage to stop if I take Buccastem early enough. I often get a period type pain mid month and now I am getting a feeling like I am been pinched inside my stomach, does anyone know what this might be?

Is the pinched feeling more closer to where you get period cramps but a bit out to the side almost appendix area? If so it could be cysts bursting.
If it is your stomach are you having any acid reflux or heartburn with it? Do you have a family history of ulcers? It could either be an ulcer or even an acid reflux/acid related irritation or sore inside your stomach or esophagus. They can find those on an endoscopy.

I also have sickness and GI symptoms with my periods and cramps. Definitely something hormonal going on there but I've only had one doc even willing to do some investigation but with the pill I'm on she can't get accurate readings for some tests.

 

[Tammy7]

When I was still having cycles..........I would get cramping and spotting even between periods. My CFS got much worse during peri-menopause...........my hormones were all over the place and the emotional rollercoaster was out of control. Fibroids caused horrid pain that would bring me to my knees. I found a supplement called Fibrinogen (sp?) and to my surprise...........it actually helped.........most supplements don't work that way for me but this one did bring me significant relief for the fibroids........if there is a bright side to this story!

 

[Grams]

Who knew? I've experienced all of the list except for hysterectomy. I clicked Other because of ectopic pregnancy (2nd pregnancy) which resulted in the removal of the ruptured tube; a miscarriage (3rd pregnancy); and early menopause. Also, related to this I think would be hirsutism.

I wondered why I felt remarkably better with my first pregnancy and find it interesting that it may have been due to ME/CFS. Also of note, I had a doctor tell me years ago when I was on blood thinners for a suspected aneurysm that the ectopic pregnancy went along with my 'condition'. Unfortunately I don't remember what he called the 'condition'.

 

[Merida]

There is another poorly defined, often not diagnosed abdominal issue that can cause problems - a long, redundant, tortuous colon. I was finally diagnosed with this after my first colonoscopy. The GI doc told me that this was not a problem, and was totally benign.

 

[Lori M]

It would be interesting also to see how many CFS sufferers have had miscarriages prior to diagnosis of CFS. Thanks for the informative site--much appreciated!

 

[corinne]

major painful periods...endometriosis...on the pill and progestin most of my reproductive life to keep me from having periods because of the pain. I was on the progestin when I developed ME/CFS.

 

[Cecelia]

Dr. John Richardson of the University of Newcastle-upon-Tyne who treated ME patients for 37 years from 1953 said that he found the incidence of breast cancer to be far lower than expected--only one patient in all of 37 years at the time of publication of the textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, edited by Dr. Byron Hyde.

My own guess is that this may be the result of low female hormones, particularly estrogen. This was the case with me. I had early menopause, severe bleeding and fibroids and it was recommended that I get a hysterectomy which I fortunately did not.

 

[Susan Hall]

I have had an early menopause at age 47. I noticed perimenopause changes at age 38. Diagnosed with CFS from age 18.

 

[Laura L]

• High Rates of Gynecological Disorders Implicated in Chronic Fatigue Syndrome

Had fibroids, heavy bleeding after 40, developed Hashimoto's thyroid -itis in my 40s I went through menopause at 49 which was unexpectedly early I thought. Of note also, I have two children, w my second child I went through three cycles of IVF in my mid-30s.[/QUOTE]

 

[Christina Bullins]

The poll should have an option for early menopause or premature ovarian failure --not induced by hysterectomy. I went into premature ovarian failure/early menopause at 34 years of age.

 

[Christina Bullins]

Wow very interesting to see all the others who went through Premature Ovarian Failure (early menopause). Off course infertility, irregular periods and miscarrige could have preceded the POF. Really hope Premature Ovarian Failure will be added as I'm very interested in seeing the prevalence. I was 34 years old..34 YEARS OLD!! and my hormones looked like a post menopausal woman. I was not diagnosed at the time and it was my GYN that predicted that I had autoimmune illness. She ran a couple of tests of rare conditions that could cause a 34 year old to go into menopause and they came back as not being as cause so she was really with no explanation. I would come to be diagnosed with Chronic Fatigue Syndrome and Fibro. About 4 years later I would come to be diagnosed also with Hashimoto's. Despite very high antibodies for Hashimoto's my thyroid has always come up normal. However my brain scan showed several lesions. My fantastic neurologist explained that Hashimoto's, a systemic autoimmune disease, most commonly attacks the thyroid but not always....it sometimes attacks the brain. He stated that this bit of knowledge is unknown to most doctors including endocrinologists.

I have dealt with fibroids and a miscarriage in my late 20's but being 44 and solidly post menopausal..I haven't had a period in years and most women I know my age haven't even began menopause. This has had such a significant impact on me. Physically and emotionally. Also talk about having it sneak up on you that your chances of having any children came and went all before the age of 34!! I would love to see statistics on how many with CFS/Fibro and/or other autoimmune disorders have had Premature Ovarian Failure and at what age.

 

[Justarose123]

I was 11 when I had my first period, I skipped monthly for up to 3 months at a time by 17 I was having burst cysts on my ovaries multiple at times, felt like being stabbed with a knife. Couldn't take the pill caused major anxiety, depression and constant bleeding.mbecame pregnant at 24, then at 26 by 28 I had bad pre cervical cancer cells. Had surgery but it closed my cervix it took about 8 treatments to reopen it but the pain each month was excruciating! This coming from a woman who had two natural births, in my late 30's cysts again. uterus cyst quite large broke. Found endromyetis also fibroids , still have period heavier now at 53? Rita

 

[Justarose123]

My CFS/ FM began abruptly with a neck/pelvis injury. I had been in a nonsymptomatic menopause for over a year, but 1 week after injury I began a very heavy 2 week period. I then developed cystic ovaries and fibrocystic breasts. Until the injury (age 49) my gynecological history was totally normal.

Mine was similar the accident, injury around 40, but until contacting MRSA on top of fibromyalgia pain and sleep disorder, Same multi level spondylitis with nerve damage, I didn't have the chronic fatigue until the MRSA

 

[Merida]

Really important observations in this whole discussion. MRSA - truly a modern plague. Terrible. Hope you were able to completely get rid of it.

Because my experience was so dramatic I tend to think that this hormonal mayhem is related to structure and function. People with scoliosis may be 'at risk' group. According to Dr. Valentyn Serdyuk, orthopedic surgeon (trauma, then special interest/research scoliosis) rotational misalignment of C-1 and C2 will cause hormonal disorders. As well, rotation of L-3/L-4 will cause menstrual disorders. He also comments that there are individual , congenital structural variations in these areas.

Dr. Serdyuk is author of 244 publications and has spent decades researching these complex structural issues. Unfortunately it is my understanding that American medicine reacted to rising chiropractic influence in the 1930s and declared that structure had nothing to do with function. Period. End of story. No research. I am sure that Big Pharma would agree.

 

[Cort]

I was 11 when I had my first period, I skipped monthly for up to 3 months at a time by 17 I was having burst cysts on my ovaries multiple at times, felt like being stabbed with a knife. Couldn't take the pill caused major anxiety, depression and constant bleeding.mbecame pregnant at 24, then at 26 by 28 I had bad pre cervical cancer cells. Had surgery but it closed my cervix it took about 8 treatments to reopen it but the pain each month was excruciating! This coming from a woman who had two natural births, in my late 30's cysts again. uterus cyst quite large broke. Found endromyetis also fibroids , still have period heavier now at 53? Rita

You really fit the model Rita!

 

[Cort]

One thing I haven't seen in the poll or comments and not even sure if it's appropriate for a gyno survery but what about infertility? Before CFS I got pregnant easily and had 2 full term healthy pregnancies and babies... after CFS I could still get pregnant but couldn't stay that way for very long, losing them all by 6 weeks (5 miscarriages within a 13 month period). Because I have CFS our fertility doc did a full immunological panel on me and found that my immune system has been attacking my throid (which explains why the TSH results were always normal but I had improvement with synthroid) and from this they can infer as they cannot test directly, that my immune system was also attacking my ovaries. LDN appears to have eased the attack but for me it was discovered too late and the damage was done. My eggs are scrambled.

I would assume it would be entirely appropo...particularly given the thyroid connection.....What I get from all this is what a rich area for study and learning this area is.

 

[ankaa]

wow... wonder what causes the excessive bleeding? It never occurred to me that this could be CFS related.

I could never tolerate the pill... I think I tried 3 different formulations, and all made me so sick